Discussions By Condition: I cannot get a diagnosis.

Low body temperature, achy, fatigue Wilsons Syndrome??

I have been suffering from low body temperature (high 96's to low 97's) for about the last year. I notice that the lower my temperature the more I ache. My metabolism has slowed down, and I am unable to loose weight. I still excersise the best I can, and eat healthy, but my weight continues to climb. Other symptoms include hair loss, gastro problems, fatigue, and more. I have been to several Doctors, and have had VERY many labs ran. Everything comes back completely normal. Thyroid tests appear to be normal. I can not get an actual diagnosis other than Chronic Fatigue. Has anyone heard of Wilsons Temperature Syndrome.

28 Replies:

Yes and at best it is a controversial diagnosis. Your body temperature might be a little low, but not necessarily. It depends on how you measure it and the time of day that you measure it. Some people have a slightly lower body temperature than others also. Your hair loss might be a significant symptom and you should make sure your doctor is aware of it. This could possibly indicate a hormonal (adrenal) problem. You should check up on candidiasis to see if this matches any of your symptoms also. You would be unwise not to persist with your doctor though.

I have been suffering from low body temperature (high 96's to low 97's) for about the last year. I notice that the lower my temperature the more I ache. My metabolism has slowed down, and I am unable to loose weight. I still excersise the best I can, and eat healthy, but my weight continues to climb. Other symptoms include hair loss, gastro problems, fatigue, and more. I have been to several Doctors, and have had VERY many labs ran. Everything comes back completely normal. Thyroid tests appear to be normal. I can not get an actual diagnosis other than Chronic Fatigue. Has anyone heard of Wilsons Temperature Syndrome.I have been running a low body temp in the same ranges for several months. I also have very high WBC and have been diagnosed with CLL. I wouldn't worry about the low body temp if your test are coming back oK. You probrably ahce more because you are so focused on it. it is "likely" all in your head. Not to sound negative just to try and give you a wake up call. If your test are fine then move on! Stop looking for something to be "wrong" with yourself. Take some good multi vitamins and green tea extract for the lack fo weight loss. Also ACAI may help you a lot there. best wishes.

I have been running a low body temp in the same ranges for several months. I also have very high WBC and have been diagnosed with CLL. I wouldn't worry about the low body temp if your test are coming back oK. You probrably ahce more because you are so focused on it. it is "likely" all in your head. Not to sound negative just to try and give you a wake up call. If your test are fine then move on! Stop looking for something to be "wrong" with yourself. Take some good multi vitamins and green tea extract for the lack fo weight loss. Also ACAI may help you a lot there. best wishes.I think you're jumping to the gun when you say "Stop looking for something to be wrong with yourself". I can tell you that I have the EXACT same issues as the original poster. Low body temperature, impossible weight gain even through dramatic amounts of exercise and diet. I've been to 5 Dr's (GPs, sports Dr's and Naturopaths), 4 nutritionists, 6 person trainers, $50,000 in gym, training and consulting fees and about another $10 in nutrition programs and suppliments (including green tea extract) all over the course of 8 years and I'm in the same boat. It's not in his head, nor mine.If you don't have legitimate advice, please keep it to yourself.

I have been running a low body temp in the same ranges for several months. I also have very high WBC and have been diagnosed with CLL. I wouldn't worry about the low body temp if your test are coming back oK. You probrably ahce more because you are so focused on it. it is "likely" all in your head. Not to sound negative just to try and give you a wake up call. If your test are fine then move on! Stop looking for something to be "wrong" with yourself. Take some good multi vitamins and green tea extract for the lack fo weight loss. Also ACAI may help you a lot there. best wishes.A post may appear from "Unregistered user" saying the same thing, but it was me. I just registered. Anyway...It's not in his head. I suffer from exactly the same things. My body temperature is a constant 95.7F (35.4C) which I believe is almost clinically hypothermic. I have excess weight gain that has persisted over a period of 8-9 years. In that time I've seen 5 Dr's (GPs, sports Dr's and naturopaths), 4 nutritionists, 6 personal trainers, $50,000 in gym and training fees and another $12-15,000 in consultants and eating programs. I've taken just about every suppliment including green tea extract, and I've earned 2 black belts in the above mentioned process, and the body fat persists through all of that. I also have the aches, poor hair growth and low energy.If you don't have real advice, please keep your "it's all in your head" stuff to yourself. I, for one, have heard it all too many times from people with normal healthy metabolisms who have no idea what this is like physically, mentally and emotionally.

A post may appear from "Unregistered user" saying the same thing, but it was me. I just registered. Anyway...It's not in his head. I suffer from exactly the same things. My body temperature is a constant 95.7F (35.4C) which I believe is almost clinically hypothermic. I have excess weight gain that has persisted over a period of 8-9 years. In that time I've seen 5 Dr's (GPs, sports Dr's and naturopaths), 4 nutritionists, 6 personal trainers, $50,000 in gym and training fees and another $12-15,000 in consultants and eating programs. I've taken just about every suppliment including green tea extract, and I've earned 2 black belts in the above mentioned process, and the body fat persists through all of that. I also have the aches, poor hair growth and low energy.If you don't have real advice, please keep your "it's all in your head" stuff to yourself. I, for one, have heard it all too many times from people with normal healthy metabolisms who have no idea what this is like physically, mentally and emotionally.The person who said it's 'likely' in your head is 'likely' from the medical profession who, when they don't know what's going on, say ridiculous things like that. Something that may help is to get a copy of the documentary 'Under Our Skin'. There is so much that is not known by practicing physicians. There are thousands of organisms, parasitical and bacterial, that are so smart it boggles the mind. They are very good at defending themselves against antibiotics for example. The latest is the idea these creatures hide themselves in 'biofilms'. The documentary talks about this and will open your eyes. You may have a bacterial infection, even lyme disease or a coinfection. These are epidemic and manifest in many, many different ways in different bodies.If you go down this road it just may lead you to hope, rather than the despair of 'it's all in your head'. May the angels of the most high guide you in your journey. Ask and you shall receive; knock and a door will open.

i have similar symptoms and more, have for about 5 years and pretty much gave in to the fact that i would be like this forever. as a bio major, every now and the i come across a new disease/disorder etc. that seems to describe/explain it perfectly. the internet has kinda turned a lot of people in hydrocondriacs and webMDS, but A LOT of disorders share many symptoms leading us to think we have one and consistently think of new ones when they are proven wrong and maybe making us look discredible; it's how the world works. anything liek stress, depression, thyroid, who knows--I feel like maybe for some people traits like extra fatigue or depression or being weaker in general is just hereditary, and the way we are due to pre-life personality and traits and whatnot.but now for the good part, one I have been lookig up on lately that seems very viable for you is adrenal insufficiency or addisons. your symptoms match, there is also lyme disease, as I mentioned earlier many sicknesses, especially those involving the immune system (and there are a LOT) have matching symptoms. and who knows, theres most likely tons of physical disorders that have yet to be discovered and could improve quality of life for all us sufferers without solutions.

Has anyone heard of Wilsons Temperature Syndrome.You didn't get much of a response the your question except the comment that Wilson's Syndrome is controversial. It is. But there is more of an answer to your predicament than that. It is controversial primarily for two reasons: there isn't any research to support it, and it is not obvious how it biochemically works. You would pretty much think that ends that, except there are several thousand M.D.s and Naturopaths that diagnose the condition and use the treatment protocol to the relief of their patients, in the U.S., Canada and England.In a nutshell, Wilson's Syndrome is a condition who's sufferers have hypothyroid symptoms including low body temperature, difficulty with weight, fatigue, hair loss and constipation to name 5 of about 40 symptoms that anyone with hypothyroidism can experience. Here's what's different with Wilson's Syndrome. When you get your thyroid blood test back they are all in the "normal range" When the test say normal, the doctor says "nope, I though sure it might have been hypothyroidism, but apparently it isn't." However, what Dr. Wilson discovered is that despite the tests, the condition responds to thyroid hormones. The condition in fact can be reversed, which isn't true for conventional hypothyroidism. That's why, even without research or tests, it still "has legs" as a condition and treatment.I trust this finally answers your questions.

I have been suffering from low body temperature (high 96's to low 97's) for about the last year. I notice that the lower my temperature the more I ache. My metabolism has slowed down, and I am unable to loose weight. I still excersise the best I can, and eat healthy, but my weight continues to climb. Other symptoms include hair loss, gastro problems, fatigue, and more. I have been to several Doctors, and have had VERY many labs ran. Everything comes back completely normal. Thyroid tests appear to be normal. I can not get an actual diagnosis other than Chronic Fatigue. Has anyone heard of Wilsons Temperature Syndrome. I am now on the protocol for the WTS .......I have been tested for adrenals, they were low,...got them raised, tested for thyroid,........on the low side,.......raised the T4 in my system but the active form(T3) dropped. My naturopath said that my metabolism is just slow........but to take my temperature.....so I did....it ranged from 96.2-97.2......my naturopath didn't know what to do so I seeked out a doctor who deals with the WTS. I can't lose weight, my muscles are always achy,...I was down to eating soup 4 days a week just to maintain my weight. My friend's think of me as a jock......I was spinning three days a week and two days/wk exercising sit-ups and such for an hour....and then I love to swim and I use to swim 4 days a week, at least a mile each time.......but still couldn't lose weight.....I don't eat processed foods....what was wrong with me.....my family just felt that I was sneaking food.......so frustrated. So now I am on this WTS protocol for two days......my temperature is almost at 98.......I don't feel much different but I am told that in a week or so I should be feeling better.........No one knows your body better than you and I think that you should look into this protocol because I think it works. Others with this doctor have had success......Good luck..... I would like to know if anyone else has done this protocol and could express their experiences on this.......

All your symptoms sound consistent with some kind of hypothyroid conditon, perhaps Hashimotos if you haven't been tested for that.If a patient came to me with your symptoms, i would do an extended Thyroid Panelincluding TPO Antibodies and AntiThyroglobulin Antibodies as well as Total T4, Total T3, Free T4, Free T3, Free Thyroxin Index, T3 Uptake, Reverse T3. Most conventional MD's only look at TSH because nothing else changes their course of treatment which would be to give thyroid hormone in some form. Of course, there are many other factors that can cause functional low thyroid with tests appearing within normal range. Doctors who practice Functional Medicine, use different ranges than those used conventionally by the labs and do diagnostic detective work via Functional Blood chemistry. See the new book by Dr. Datis Kharrazian: "Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal: A Revolutionary Breakthrough In Understanding Hashimoto's Disease and Hypothyroidism" (Paperback - Feb. 2, 2010)i just spent three days at one of his seminars & i raced to the conference room every day to get a seat up front. He has amassed so much research to back up everything. Get the book and find a Functional Health Care Practitioner. Best of Luck!I have been suffering from low body temperature (high 96's to low 97's) for about the last year. I notice that the lower my temperature the more I ache. My metabolism has slowed down, and I am unable to loose weight. I still excersise the best I can, and eat healthy, but my weight continues to climb. Other symptoms include hair loss, gastro problems, fatigue, and more. I have been to several Doctors, and have had VERY many labs ran. Everything comes back completely normal. Thyroid tests appear to be normal. I can not get an actual diagnosis other than Chronic Fatigue. Has anyone heard of Wilsons Temperature Syndrome.

I have been suffering from low body temperature (high 96's to low 97's) for about the last year. I notice that the lower my temperature the more I ache. My metabolism has slowed down, and I am unable to loose weight. I still excersise the best I can, and eat healthy, but my weight continues to climb. Other symptoms include hair loss, gastro problems, fatigue, and more. I have been to several Doctors, and have had VERY many labs ran. Everything comes back completely normal. Thyroid tests appear to be normal. I can not get an actual diagnosis other than Chronic Fatigue. Has anyone heard of Wilsons Temperature Syndrome. i wonder if the original poster had an cortisol test for Cushing's Syndrome (high cortisol causes weight gain). Also things like Polycystic ovulation syndrome (in those who have menstrational issues eg a very long menstrational cycle or no periods) can cause one to suffer from obesity. (this thou dont cause gastro problems). Metabolic syndrome is another thing which can cause weight gain. Weight gain for no reason is a health issue and shouldnt be ignored.

I am now on the protocol for the WTS I would like to know if anyone else has done this protocol and could express their experiences on this.......If you want to read the experiences of others, look at the archives to Dr. Wilson's Newsletter. The protocol works depending on how carefully you can stay with it. Two days is way too little time for it to work. Wilson estimated 65% - 85% effectiveness depending on how well you can stay with the protocol precisely. I would also say it depends on the experience of the physician you have and how well they stay with the protocol. There are roughly 2000 physicians in the U.S. that have experience, but they are hard to find because they don't advertise.There is another way to go at this that is easier and less expensive. Dr. Wilson found a very gifted professor of Naturopathy who specialized in the endocrine system. He was able to put together a combination of herbs, minerals and amino acids that is equally effective as the WT3 protocol. One remedy works best for some, another for others, and for maybe 15% the only remedy is both. For now, definitely stay with the WT3 protocol, but get the doctor's manual so you can help guide your doctor unless he or she is experienced.For others that find themselves with hypothyroid symptoms, low body temperature but normal thyroid blood tests, start with the botanical approach to treating Wilson's Syndrome.

I have been suffering the same things with increased weight when I havent ever had to worry about weight. I am now 54 and about 40 pounds overweight. I am seeing a ND who first addressed my Adrenal issues, I started feeling better but still low temp. I have tryed some other things but havent worked (by increasing temp). I have just started ThyroCare and really hoping it will increase my temp and get my metabolism back to normal. Have your thought of trying it? Good luck, I'd like to hear if anyone else tryed it and had success.

Just had an issue where I should have had a fever, but didn't and never do. Noted my body temp has been low for a long time. In more recent years, can wake up with oral temp in the low to mid 96's, but no more than abut 97.5. You are supposed to take the temp which correlates to metabolism when you first wake up, under the arm pits. But, I would think if it is that low orally, and after you are up, it would be even lower when you first rise and under the arm. I have seen websites here and there which don't just call Wilson's syndrome controversial, but call it "quackery" and the medical "thyroid association" derides it also. But I have one question about all of that: prior to blood tests ALL credible and "normal" physicians based a hypothyroid diagnosis on a low body temperature and other "classic" symptoms. A low body temperature was always a true and classic sign of hypothyroidism before blood tests, particularly the TSH. So the issue here, seems to be about the idea that the medical establishment has decided that the "old ways" mean nothing now in light of current blood tests and particularly the "normal ranges" of those blood tests, which have even changed lately (you used to be considered "normal" at a lower TSH than now). Does that really seem reasonsble, especially when we have very complex processes, such as auto immune issues? I have Hashimoto's, which can be diagnosed by ultrasound and anti-thyroid antibodies, and mine used to be extremely, extremely high, but have lowered recenctly, but conversely I am less healthy. My endo sees that I still have hypo symptoms and has his own idea of what might help it further, but he too keeps to the idea that as long as my tests come back ok, he can not treat me any differently , as far as T4 goes. I have tried adding T3 and it seemed to help a bit, especially mentally, but it didn't last. I am not sure if taking pure T3 would help, But I do believe there is something else going on beside just needing "replacement of T4 alone" which is the conventional wisdom. Although I'm not sure that associating low body temp with hypothyroid is anything new or different enought to be named after "Dr. Wilson" but perhaps the treatment idea is a bit unique. Whatever the case, I think conventional medicine needs to be a lot more open minded!

That sounds very familiar. I was finally diagnosed with Carcinoid Cancer. I am not researching to find out why I am soooo cold! I know it is from the cancer, but I am trying to find out why. My tests were normal for 5 years until they finally tested the serotonin and 5HIAA.. My serotonin was triple normal. After they removed my tumors November 15, I lost 41 pounds so far. It is January 27. I am getting my energy back. My thyroid was always perfect along with all my blood work. I "appeared" test wise to be very healthy. I am FREEZING.

Just had an issue where I should have had a fever, but didn't and never do. Noted my body temp has been low for a long time. In more recent years, can wake up with oral temp in the low to mid 96's, but no more than abut 97.5. You are supposed to take the temp which correlates to metabolism when you first wake up, under the arm pits. But, I would think if it is that low orally, and after you are up, it would be even lower when you first rise and under the arm. I have seen websites here and there which don't just call Wilson's syndrome controversial, but call it "quackery" and the medical "thyroid association" derides it also. But I have one question about all of that: prior to blood tests ALL credible and "normal" physicians based a hypothyroid diagnosis on a low body temperature and other "classic" symptoms. A low body temperature was always a true and classic sign of hypothyroidism before blood tests, particularly the TSH. So the issue here, seems to be about the idea that the medical establishment has decided that the "old ways" mean nothing now in light of current blood tests and particularly the "normal ranges" of those blood tests, which have even changed lately (you used to be considered "normal" at a lower TSH than now). Does that really seem reasonsble, especially when we have very complex processes, such as auto immune issues? I have Hashimoto's, which can be diagnosed by ultrasound and anti-thyroid antibodies, and mine used to be extremely, extremely high, but have lowered recenctly, but conversely I am less healthy. My endo sees that I still have hypo symptoms and has his own idea of what might help it further, but he too keeps to the idea that as long as my tests come back ok, he can not treat me any differently , as far as T4 goes. I have tried adding T3 and it seemed to help a bit, especially mentally, but it didn't last. I am not sure if taking pure T3 would help, But I do believe there is something else going on beside just needing "replacement of T4 alone" which is the conventional wisdom. Although I'm not sure that associating low body temp with hypothyroid is anything new or different enought to be named after "Dr. Wilson" but perhaps the treatment idea is a bit unique. Whatever the case, I think conventional medicine needs to be a lot more open minded!When I woke this morning at 4 am from pain, I took my temp and it was 95.4. I took it under my arm and it was 93.2!!!!! I was very confused. Very irrational. I was crying, I was confused and very depressed. my body hurts all the time. I am very short tempered, I can not keep a train of thought. I cannot lose weight. I hardly eat. I know my family thinks I am eating more than I say. But I'm not. I was always very active. I am getting less and less active. I feel nauseous all the time. If I eat I feel nauseous, if I don't eat I feel nauseous. I have a terrible attitude. I am just not myself. it has been years and years and I have been left to fend for myself. Sometimes I think I am crazy but I know I am not. I run a business. I am a children's author and an award winning photographer. I am a very strong woman mentally and used to be physically but lately, I don't know who I am. I became vegetarian 9 years ago, I take a great vitamin from Awareness Life. I keep my colon clean. I do what ever I can to be OK. but I am not ok. a temp of 95.4 is very low. It has been as low as 95. if my temp is 98.6 then I am very sick. Try getting a doctor to beleive you. I also get symptoms that come on suddenly where I sweat profusely and my blood pressure drops to where I get the same symptoms as low temp. I need fresh air. I laid in the snow for 20 minutes before I was able to get up off the ground and call for help. I went to the ER a week or so ago for a bladder infection. turned out to be a urinary tract infection from dehydration, but my temp was 98.6 I said oh I have a fever and the doc said no that is normal. I said well my temp is usually 96.5 so when it is 98.6 it means I have a fever and he insisted I did not until I finally told him off. when I was a kid in grade school, I would be sick throwing up what ever, and they would not send me home because I lacked a temperature. My mom had to tell them I run a low temp all the time. So this has been a problem all my life. I didn't do well in school because I couldn' concentrate. Low body temp has been a serious issue for me all my life.

The temperature of someone is calculated with the assistant of a thermometer, and these resources are standardizes either in degrees Celsius or Fahrenheit. In the US, Fahrenheit is the modulus for measuring a person's body temperature. A temperature of 98.6 ° F is well thought-out to be the average standard temperature, but the regular body temperature range be capable of vary throughout the procedure of a day. Diseases There are some diseases that normally afflict human beings and are identified to be a cause for a go down in body temperature. Here are a few diseases that cause for a drop down in body temperature: AnemiaLiver DiseasesPneumoniaThyroid ProblemsSepsisHepatitis CAdrenal Problems Experiencing low body temperatures just the once in a while is completely normal, as the body will not continue a constant temperature the whole time the day. But a regular drop in body temperature for a long-drawn-out period usually denotes some disorder. You should be visit a doctor directly to make sure that everything is alright: - http://www.alert-1.com

I have been suffering from low body temperature (high 96's to low 97's) for about the last year. I notice that the lower my temperature the more I ache. My metabolism has slowed down, and I am unable to loose weight. I still excersise the best I can, and eat healthy, but my weight continues to climb. Other symptoms include hair loss, gastro problems, fatigue, and more. I have been to several Doctors, and have had VERY many labs ran. Everything comes back completely normal. Thyroid tests appear to be normal. I can not get an actual diagnosis other than Chronic Fatigue. Has anyone heard of Wilsons Temperature Syndrome.You should be visit a doctor directly to make sure that everything is alright:- Life alert The temperature of someone is calculated with the assistant of a thermometer, and these resources are standardizes either in degrees Celsius or Fahrenheit. In the US, Fahrenheit is the modulus for measuring a person's body temperature. A temperature of 98.6 ° F is well thought-out to be the average standard temperature, but the regular body temperature range be capable of vary throughout the procedure of a day. Diseases There are some diseases that normally afflict human beings and are identified to be a cause for a go down in body temperature. Here are a few diseases that cause for a drop down in body temperature: AnemiaLiver DiseasesPneumoniaThyroid ProblemsSepsisHepatitis CAdrenal Problems Experiencing low body temperatures just the once in a while is completely normal, as the body will not continue a constant temperature the whole time the day. But a regular drop in body temperature for a long-drawn-out period usually denotes some disorder.

I have been suffering from low body temperature (high 96's to low 97's) for about the last year. I notice that the lower my temperature the more I ache. My metabolism has slowed down, and I am unable to loose weight. I still excersise the best I can, and eat healthy, but my weight continues to climb. Other symptoms include hair loss, gastro problems, fatigue, and more. I have been to several Doctors, and have had VERY many labs ran. Everything comes back completely normal. Thyroid tests appear to be normal. I can not get an actual diagnosis other than Chronic Fatigue. Has anyone heard of Wilsons Temperature Syndrome.You should be visit a doctor directly to make sure that everything is alright:-Life alert The temperature of someone is calculated with the assistant of a thermometer, and these resources are standardizes either in degrees Celsius or Fahrenheit. In the US, Fahrenheit is the modulus for measuring a person's body temperature. A temperature of 98.6 ° F is well thought-out to be the average standard temperature, but the regular body temperature range be capable of vary throughout the procedure of a day. Diseases There are some diseases that normally afflict human beings and are identified to be a cause for a go down in body temperature. Here are a few diseases that cause for a drop down in body temperature: AnemiaLiver DiseasesPneumoniaThyroid ProblemsSepsisHepatitis CAdrenal Problems Experiencing low body temperatures just the once in a while is completely normal, as the body will not continue a constant temperature the whole time the day. But a regular drop in body temperature for a long-drawn-out period usually denotes some disorder.

I have been suffering from low body temperature (high 96's to low 97's) for about the last year. I notice that the lower my temperature the more I ache. My metabolism has slowed down, and I am unable to loose weight. I still excersise the best I can, and eat healthy, but my weight continues to climb. Other symptoms include hair loss, gastro problems, fatigue, and more. I have been to several Doctors, and have had VERY many labs ran. Everything comes back completely normal. Thyroid tests appear to be normal. I can not get an actual diagnosis other than Chronic Fatigue. Has anyone heard of Wilsons Temperature Syndrome.Are you by chance Rh-Negative or from an Rh-Negative Family? I am a rare blood type researcher looking into the connection between Rh-Negative family lines, the recessive factor and autoimmune conditions. I am familiar with the T3 and T4 conversion issues of the thyroid, said to be called WTS. However, many of us Rh Negative's and +/- Recessives tend to have this secondary hypothermia issues, as well as Thyroid, Gastro, eye, joint issues, mineral and vitamin deficiency and more. I am not sure I can post the link here but you can google "Rh Negative Autoimmune" and you will find my site. The research may be very useful to you.Good Luck!

I have been suffering from low body temperature (high 96's to low 97's) for about the last year. I notice that the lower my temperature the more I ache. My metabolism has slowed down, and I am unable to loose weight. I still excersise the best I can, and eat healthy, but my weight continues to climb. Other symptoms include hair loss, gastro problems, fatigue, and more. I have been to several Doctors, and have had VERY many labs ran. Everything comes back completely normal. Thyroid tests appear to be normal. I can not get an actual diagnosis other than Chronic Fatigue. Has anyone heard of Wilsons Temperature Syndrome.Well, Wilson's usually involves copper accumulating in the body as well. Could be lupus in the early stages, sometimes it takes a few years for that one to test out.